the patient celiac

My Journey

I first learned about Celiac Disease during medical school but was unaware that I was suffering from it and had been for years. I was diagnosed when I was 33 years old, about 25 years after my symptoms first started.

As a child I suffered from recurrent stomach aches, cramping, and diarrhea and was told that I had a “nervous stomach.” I remember spending a lot of time doubled over in pain and not wanting to eat.

As a teenager I developed a cystic, itchy rash all over my back and shoulders that left horrible scars (dermatitis herpetiformis).  I was told it was cystic acne. I had a mystery “mono-like” illness my junior year and slept for hours everyday after school. My abdominal bloating was so bad during adolescence that I looked like I was 7 to 8 months pregnant at times.

In college I was treated over and over again for stomach and intestinal ulcers but my symptoms got worse instead of better. I had an upper GI (barium swallow) performed which did not show ulcers and was normal. I was referred to a GI specialist for the first time. He did not examine me, diagnosed me with Irritable Bowel Syndrome (I.B.S.), and told me that my digestive complaints were likely due to repressed sexual abuse. When I told him that I had never been abused, he insinuated that I was lying, and recommended that I get counseling and eat whole grains.

I had increasing severe insomnia as college progressed, which seemed to correlate with beer consumption. I remember wondering if I was allergic to beer...

In my twenties I developed hypothyroidism (underactive thyroid gland) from Hashimoto’s disease. I had moderately severe anemia, which every M.D. chalked up to menstruation, even though my periods were very light. I developed joint pains in my fingers, knees, and ankles and had to stop running because of chronic knee clicking, swelling and discomfort. I was evaluated for Lupus, Lyme Disease, and Rheumatoid Arthritis multiple times. At one point I was diagnosed with "atypical lupus."

I was in medical school and residency during this time so I was around doctors all of the time. Every time I asked others for advice about my symptoms (joint pain, anemia, thyroid disease, bloating, etc.) and normal autoimmune work-up, I was told that my symptoms were probably due to a combination of “stress” and I.B.S. I began to get large ulcers in my mouth and to lose hair. I felt hungry all of the time and subsequently ate all of the time, but never gained weight (which I admit, thought was a good thing at the time). I developed depression.

I had two miscarriages when trying to conceive. I struggled to breastfeed all of my babies due to having a low milk supply.

After my 3rd child was born in 2009 I was so sick that I feared that I had some sort of cancer. I had daily diarrhea, bruises all over my body, hair loss, arthritis, and low back pain. I had huge sores throughout my mouth, ran a low grade fever, had jaw pain which made it difficult to eat, and recurrent yeast infections. My brain felt like mush.  I felt like I was "hungover" every day even though I wasn't drinking any alcohol.

During this postpartum time period I had the most memorable GI "bug" of my life.  I spent 2-3 days with vomiting and diarrhea and I ate nothing. Despite being sick with a stomach flu/virus, most of my symptoms went away and I felt better than I had in ages.  Then, when I did start to eat again, lots of foods that contained wheat, like crackers, noodles, etc., all of my symptoms came back with a vengeance.  I realized that I was getting sick from something in my diet and I was, fortunately, diagnosed with Celiac Disease a few weeks later. I have been gluten free since then and I have never looked back (although I do miss pizza, beer, tiramisu, and my grandmother's apple pie from time to time).

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